Becoming an unpaid carer when your partner or parent is diagnosed with dementia is hard – it is full-time (and then some) job for which very few are remotely qualified when they are thrust into the role.

It is even harder when they have a much-misunderstood form of the condition, such as Lewy body dementia.

Sue Stone, from Sheffield, had had periods of poor mental health throughout her life beginning with postnatal psychosis after the birth of her only son so her husband Paul had some experience of looking after someone that is unwell.

But nothing prepared him for the stress of being the sole 24-hour-a-day seven-days-a-week carer of someone with LBD.

Sue had been a hospital pharmacist for her whole career. “She was a very bright lady, extremely organised, very proud, outstanding memory for fine detail,” Paul said.

After a rapid deterioration in her early 70s, she was diagnosed with Alzheimer’s, incorrectly as it turns out so many people with Lewy body dementia are.

A consultant finally overruled this after noting her hallucinations and delusions during visits. Falls were also recorded – all core LBD symptoms.

Paul retired from the metals industry to care for his wife. He felt he couldn’t talk to anyone about what was going on as Sue might overhear and become paranoid and agitated as she was in denial of any problems.

In time, Sue became a risk to herself, flooding the house and burning carpets and tearing down curtains. After much difficulty as there were very few places which could accommodate her needs, she is now settled in a care home.

Keeping the connection

 “When I visit, she is often talking to little people only she can see,” Paul said. “I am convinced she doesn’t know who I am, but I am keeping a connection. I am grateful to friends and family have helped me get through this. You reach a stage where you wonder: what can I do for my wife now?”

Paul was shocked by how hard it was to find information about Sue’s health and care: “You don’t even know what the right questions are. It is absolute hell to get anything from NHS, and Social Services. There are very good people in both organisations but finding them is difficult. You can’t find a number anywhere, when you do, no one answers. They don’t let you know what is happening.

“I’ve become hardened somewhat and when motivated, very determined to get “justice” for Sue. I’m only doing what I know she would have done for me had the situation been reversed.”

He added: “No carers have time to research anything anyway. I am part of a carers group now, which incidentally I couldn’t attend until my wife went into care, and I talk about Lewy body dementia every chance I can, trying to support friends and acquaintances who are a few years behind in the journey.

“I am concerned about the access to information. Too much is done online for our generation. This is a subject that comes up every meeting of our carers group. Most of the demographic caring for a loved one with dementia now have not used computers or smartphones routinely in their lives.”

Paul’s advice to fellow Lewy body dementia carers

• Look after yourself – it’s a tough journey, physically and mentally hard with many new challenges and you are the most important person in the equation
• Act sooner rather than later. You know your loved one better than anyone so be prepared to press GPs for a referral to memory clinics and risk upset at home where denial exists
• Try to avoid challenging the person entering the dementia world. What they are experiencing is real to them
• Power of Attorney is very important to manage both financial affairs and health needs otherwise you have to apply to the Court of Protection and that can take up to 12 months. Implementation of Power of Attorney can also be very complicated although it shouldn’t be. Some organisations are very good others equally bad
• I suffered a stage which was HELP, I NEED HELP but had no idea what help I needed and didn’t have time to look for it. Support from family and friends was the only thing that stopped me from going under at that time
• Engage support wherever you can. The Carers Trust operates in most areas, they understand and are very supportive with regular meetings. Social prescribers, attached to GP surgeries, are a guide to what is available to make life more manageable for both people living with LBD and carers
• In-home care might be needed. Someone with dementia needs security and different people appearing every day is not good. A couple of private carers will be better than a different person from a care company every day
• When it comes to care homes, do research, visit, ask loads of questions and make notes. Ask if you can spend an hour just watching preferably without the care home preparing for it, weekends are a good as management is unlikely to be there. The quality of care is more important than the surroundings
• When someone moves into full time care, it’s the end of one set of problems and the start of a new set. Cost of care is dramatic and available support limited. This is not an easy process to get funding. Beware of the companies that offer to manage it for you, I made that mistake. I fought it myself with support from our son, failed and then took it to appeal which was successful
• One thing Sue would have done, which I’m learning is extremely important, is to keep notes: names, email addresses and telephone numbers for all discussions and to ask for them when not offered. “Officials” where possible avoid giving any information in case you ask questions which they don’t like, this particularly applies to some parts of Social Services and the NHS

Please sign and share our #LewyListpetition today and join us in advocating for meaningful change for those impacted by LBD: https://www.change.org/p/help-people-with-lewy-body-dementia-get-treatment-and-support